Thank you to My journey with Endometriosis for posting the endometriosis awareness petition!!
Also, a belated but very heartfelt thank you to Alicia of Yaya Stuff for starting the petition-link-posting trend!
Will you be next to post it?
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
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- Jeanne
- I'm 44 years old & my endometriosis symptoms began at 13; I was finally diagnosed at 23. In addition to endo, I have multiple other chronic illnesses. My doctors believe many of these are related to my endo. This blog is to reach out to endo patients, other chronically ill patients, & their loved ones. The typical diagnosis occurs 9.9 years after the onset of symptoms! I have heard many women’s stories: of not being believed by their medical professionals; women who have had their symptoms marginalized or dismissed; women who go from doctor to doctor searching for someone who will truly understand, take them seriously, & help them get relief/manage their symptoms. There are many wonderful health care professionals out there who treat endo patients. Unfortunately, finding them can be challenging.
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8 comments:
You're welcome! ;)
I'm sorry you're not feeling well :( :(
Alicia,
Sorry it took me so long to thank you for your efforts.
The petition has been really active lately. Yay! :)
I feel like I could vomit at any moment this week. I've been blaming it on the antibiotic I started taking Monday. I hope that's it because in addition to nausea I have severe abdominal pain and it's scaring me.
I should probably explain for those who did not read the email you got, Alicia, that I had to rush in to an "After Hours" clinic on Monday night for a "rash" (for lack of a better word) that was spreading rapidly. Long story short, I have either cellulitis (bacterial infection) or shingles (viral). They couldn't say for sure. So they gave me an antibiotic and I've been very nauseous ever since.
Of course, I could still be nauseous from the "After Hours" building itself... which had the strongest "air freshener" I have EVER seen anywhere. For those who haven't read my multiple chemical sensitivity (MCS) posts and who aren't aware of it, "air fresheners" don't so much "freshen" the air as load it with toxins. Yes, there is research to prove that air fresheners contain toxins like carcinogens and neurotoxins.
Anyway, the "air freshener" was right in front of the check-in desk. All the better to spray each patient as they check in, I guess. Forgive my sarcasm. I'm just ticked off because now I feel compelled to write a letter to the clinic educating about the dangers of using these chemicals.
Thankfully, Susie at The Canary Report (great blog! check it out!) sent me a ton of info back when I emailed her asking for supporting documentation to show the clinic that this stuff is dangerous and certainly has no place in a health clinic.
So... it has been a pretty brutal week. I've been blogging up a storm despite feeling very ill because there is just so very much work to be done for endometriosis awareness.
I just hope that my abdomen goes back to its normal messed-up self rather than this extra level... soon.
Oh, and did I mention my colonoscopy will be 4/3 and I'm scared to death of the prep? Yeah, this will be my 4th one plus I've done preps for some of my surgeries. So this is my 6th or 7th prep and my body does not handle them well at all.
The reason for the colonoscopy is that my cyclical rectal bleeding jumped a level to rectal blood clots. I believe it's endo because I have encountered other women with rectal bleeding associated with endo even if endo has never been found in/on the intestines. I've had endo in the cul-de-sac numerous times but never in the colon.
(The foot of my colon removed in 1996 was for a partial blockage caused by a malrotated colon/paraduodenal hernia).
Anyway, docs never like to connect symptoms such as my cyclical rectal bleeding to endo but my personal belief is that (in my case) that's what the cause is. I can't prove it but they can't find any other explanation.
Most docs pooh pooh my theory. Yet none of them could explain my symptoms when I had this cyclical rectal bleeding (previously/years ago) either.
I quizzed the gastroenterologist who will be performing my colonoscopy about it. He said if there's no endo perforating the bowel wall, that it would not be likely to be endo-caused. I told him the cul-de-sac history and asked if endo there could cause this.
He looked liked he was about to say no but stopped short, paused briefly, and said that it would be very rare to have rectal bleeding/blood clots if there's no endo in the colon/on the colon ---(and the cul-de-sac is the closest spot endo has ever been found in my 7 surgeries).
He said the magic word! Rare. I always get the "rare" stuff. So, I expect he'll do the colonoscopy and find nothing to explain it. That's what happened in my last colonoscopy in 2001. Eventually the bleeding stopped on its own back then (after 18 months... always cyclical). As far as my last round of cyclical rectal bleeding, it wasn't endo that my pelvic pain specialist could see during a lap either. I had a lap after the previous colonoscopy and that particular lap didn't find endo in the cul-de-sac. (The cul-de-sac is the closest location to the intestines that endo has ever been found in my case).
I do not think the cyclical nature of my rectal bleeding is a coincidence. Every single month, the rectal bleeding starts 2-3 days before my period starts. It's the same way with each cycle. If my period runs early, so does the rectal bleeding. If my period is running late, the rectal bleeding starts late too. The rectal bleeding always precedes my period by a couple of days.
I give him credit for acknowledging that there could be any possible link between my symptoms and endo. I've had plenty of doctors give me a flat-out no. This particular doctor is the same one who did my 2001 colonoscopy. He knows my long GI history and knows that no one ever did answer why this happened back in 2000-2001.
I really like him because he LISTENS and he spent a fair amount of time with me in the pre-colonoscopy appointment talking to me like a doctor who cares about the whole person and paying attention to the different connections between my illnesses. He was really impressive that way.
He also understood that there are certain bowel preps that are out of the question for me (like the one I used in 1996 that "stirred up" my kidney stones... resulting in me passing 4 stones in 2 days).
I think he sees my reasoning that 18 months straight of cyclical bleeding back then that he himself had scoped me for didn't give the answers. The only thing he found unusual was what looked to him like "lymphoid tissue" in the rectal area. It came back OK from biopsy. (Yet another pathology department "mystery check" for me... I've had others). This doc looked like he was still puzzled about that tissue from 2001. The man either has a darn good memory or he keeps very detailed charts because he clearly remembered this lymphoid tissue business when I went in to see him a couple of weeks ago.
The rectal bleeding this time started about 5 months ago but January was when I saw the first-ever rectal clots and got freaked out enough to tell my primary doc (when I knew she'd refer me to the gastro... who I did not want to see because I knew what he'd want to do)! :(
However, I clearly need to get checked out. I can't assume it's endo. I could be wrong. I've had cancer before. I'd be foolish not to get a colonoscopy now.
Anyway, right now I'd settle for not feeling like I'm going to vomit.
Jeanne
P.S. I've been meaning to blog about the "After Hours" incident and the colonoscopy. This comment will give me a head-start on each of those 2 posts, huh?
Got my button up and I teached me to do it all by my own self.
yay!
Whoops, should've read your comment first Jeanne before spouted all my petition button happiness.
SO sorry for your sickness of late and upcoming colonoscopy.
Hugs.
And you are forever in my heart and prayers.
Jannie,
I saw the awesome button you made for people to click on to reach the petition. I love it! Holy cow... that's the first petition link I've seen with such an eye-catching graphic. That's awesome! Thank you for taking the time to make that!
"Yay" is right!
Jeanne
Jannie,
No worries. You should be happy about your petition button that you worked so hard on. :)
No need for you to be sorry. Not your fault I'm sick!
I have been dreading having another colonoscopy for a long time.
With having had diarrhea since the early 1990s, having had 3 previous colonoscopies, having had a foot of my colon removed in 1996 for a non-endo partial intestinal blockage, and now the recurrence of the cyclical rectal bleeding plus the new symptom (rectal blood clots), I really can't put off a colonoscopy any longer. :(
The colonoscopy is the easy part. It's the prep I dread. I have extreme reactions to these preps... not fun.
Thank you, Jannie!
Jeanne
hola jeanne, tienes un blog muy interesante, y una música muy linda.
saludos desde españa.
Marga,
Thank you very much for your comments! I just looked at your blog and I see you like Bruce Springsteen too. Music is so wonderfully universal! Gracias!
:)
Jeanne
--------------
Readers,
Here is what Marga said:
----------- Machine Translation ----------------
Hello jeanne, you have a very interesting blog, and very pretty music. Greetings from Spain.
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